OI exists everywhere

I think a common misconception for folks I have been talking with since my return from Panama is that Osteogenesis Imperfecta is specific to Panama. It is not.

Cases of OI exists all over the world, in fact here in the U.S. there are between 20,000 and 50,000 cases.

Well then why are we doing this project just for Panama? I will tell you.

Here in the U.S., patients with OI still suffer and they still break a lot of bones and many have really difficult childhoods, but they can receive treatment to help improve their quality of life. In Panama they can’t.

If you think the health care system in the U.S. has issues just research a little bit about Panama’s. It is not good at all. Most of the children in Panama with OI have no heath insurance and even if they do, the drug needed to strengthen their bones and joints is unavailable. We have it here in the U.S., but in Panama the government refuses to approve it.

Patients could travel to the U.S. or Europe to get it, but they can’t afford the travel costs. There are also hundreds of unreported cases in Panama because awareness of the disease is limited. So many people live in remote areas and they don’t even know that their child has a disease and that something is wrong. If they take them to the doctor, the doctors don’t recognize the illness as OI, they just treat the broken bones and send the children home.

Here in the U.S. children can receive the full treatment which consists of physical therapy and treatments of this drug called Pamidronate which is given every three to four months by injection. Without that kind of treatment a child with OI will continue to fracture bones.

We saw cases where children had broken every bone in their body and most of them multiple times. I can’t even imagine that. Here in the U.S., we need to be aware that it exists here too. We need to help those in need everywhere, not just in Panama, but here in the U.S. too. Fortunately, the situation in the U.S. is much more under control than the situation in Panama.


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